If ever there was a story that reinforces the need to raise awareness of Kawasaki Disease, then it is the one I will be sharing with you tonight in a blog that is very different to my usual writing; today I am giving you someone else’s words.
This is Max’s story, shared on Social Media today by his mother, Maryann, a woman with more strength than I could ever hope for. Like me, Maryann is committed to sharing Max’s story to raise awareness to help prevent future misdiagnosis, and to pay something forward; to make our children’s suffering at the hands of KD worthwhile. Unlike me, Maryann’s journey ended with unimaginable heartbreak. She has given me permission to share her post here in my blog, and I have therefore copied without edit for you to read, just as I did when I awoke to the post this morning.
Today’s blog is written in support of all the children who have suffered with this devastating illness. It is written in memory of the Mighty Max Rocklin.
“I am only doing a condensed version of what happened last summer. June 22, 2014 Max complained of his belly hurting around his belly button. The next day he complained of having a pain on the right side lower abdomen and started running a fever. I called his doctor and she wasn’t in. So I gave him Ibuprofen and watched him. Tuesday morning he woke up with his left hand drawn up and his face felt numb. So I took him to the first emergency room. They said he has appendicitis. They couldn’t handle that there. So he was transported by ambulance to another local hospital. They did an ultrasound of his belly. His illium, small intestines and colon was inflamed. So the surgeon there said Max needed to go to a children’s hospital. They couldn’t transport him until the next morning. So he was admitted to the hospital. They wanted to do a ct scan with conarast. So that was done. He still was running fever and hurting.
Wednesday morning Max was transported, by ambulance, to a hospital 4-5 hours from our house. The ambulance started smoking on our way there. So they had to pull off the highway. The airconditioner stopped working. They had a small fan to blow on Max. They decided to throw on the lights and sirens and speed there. We got to the hospital and saw 2 doctors. One was certain he had Crohns disease. (Max NEVER had diarrhea) They wanted to do an endoscopy and colonoscopy. So he had to drink these huge cups of myrilax. He couldn’t drink them. So they said they would have to put an NG tube down his nose into his stomach. My mom went for a walk at that time. I stayed with Max. They didn’t sedate him. I had to watch my sweet boy scream, “Help me momma!” over and over again. When they were done. I tried to comfort him. He said, “No don’t touch me.” He was upset because I couldn’t help him. That totally broke my heart. He had wires everywhere. He started having diarrhea from the myrilax. So I had to carry him to the bathroom because he was so weak. I would undo all of his wires, pick him up, carry him and pull the iv pole with us into the bathroom. I would have to sit in front of him so he could lean on me. He would hold on tight and pat my back. God I miss that sooooo much!
The doctor continued to say he had Crohns because now he had diarrhea. Um, he didn’t have it until they gave him myrilax!!! He was also tested and it came back that he had C Diff. A contagious virus that comes from dirty hospitals! So we were quarantined to the room. I had to bleach everything in the room if we touched it. Mom and I could leave the room as long as we had gloves and a gown on. This was for almost an entire week. I think it was Thursday that they did the endoscopy and colonoscopy. Nothing showed Crohns! By this time Max had bright red eyes, a rash from head to toe, red spots under the skin on his palms and feet, feet, legs and abdomen swollen, his feet were peeling, his fingers were peeling and his pinky nail was coming off.I argued with so many doctors, interns, nurses, etc. NO ONE would listen to me! They always had an aswer to why these things were happening. His white blood count was through the roof!!! He had chest pain several times. They would just give him more morophine.
He was on Iv’s, morophine, vancomyacin, ibuprofen, benadryl, etc. By July 3, 2014 they said he could go home because his white blood count was down. So after 9 days in the hospital they were sending him home with antibiotics.My thinking was his blood work looks better so let’s take him home. Sometimes people get better at home. On July 4 Max got his bunny we promised him in the hospital. He was still so sick. So he slept with us. He lost 7 lbs in the hospital so he looked so sick. I started him on pediasure and fed him whatever he wanted. He started looking so much better.
July 12 he wanted to play outside for a few minutes. So we said ok because he was doing so much better. About 15 later he came in with chest pain. It didn’t get better so we took him to the emergency room. They said he needed an echocardiogram but couldn’t do it because he was a child!! The doctor said it was probably just indigestion from the prednisone. But the same doctor wrote the word Kawasaki across the top of the dicharge papers. We were sent home. I called the dr 4-5 hours away. She said to give him tums. He started feeling better. The next day he was going down hill. So back to the ER. The doctor said we had to get Max back to the hospital 4-5 hours away. So we waited for several hours for transport. We got the same ambulance with no air. We got to the hosptal at 1:00 am. So Max and I got in his room and we laid down. July 14 he had an echocardiogram. I thought there would be nothing. But the cardiologist had this horrible look on his face. He told me that Max had 4 aneurysms in his heart.1 normal size, 2 medium and 1 was the biggest they had ever seen in a child. He also had a blood clot to the main artery of his heart. The room spun, my chest was pounding, I kept thinking, “NO you are wrong!” I didn’t let Max see me upset. The cardiologist said, “Max has Kawasaki Disease.” What? I had never in my life heard of something like this. Why wasn’t my son diagnosed sooner? So 22 days after he started getting sick he was finally diagnosed. I called my mom, dad and husband to get to the hospital. The doctor was talking with a specialist in San Diego. They wanted to transport him in a private medical jet to San Diego. But they couldn’t because of the blood clot in his heart. He was put in ICU. So they gave him coumadin to try to break it up. So the coumadin caused Max to have 4 hour nose bleeds. So iv #4 was put in to give him blood. His veins were so weird that the pic team had a hard time getting a vein. He would scream and cry when they would just flush them. He had 2 iv’s in each arm. I would have him look into momma’s eye and count with me. It would calm him down.
Tuesday July 15 Max got really scared. He said he saw glitter all over the room. All over Stephen and I. We figured that it was angels visiting him. At this point I still didn’t have it in my head that my baby could die. He kept having nose bleeds. But he was a little better. He wouldn’t eat or drink much.
Wednesday July 16 he wanted Chick Fil A. So my dad and Stephen went to get him some. He took just a couple bites. He played on his ipad and listened to music. Stephen and I wanted to take a shower. So we wentback to my parents hotel while they stayed with Max. I had a horrible feeling. I told Stephen we had to hurry.We saw Dunkin Donuts on the way back so we got him 6 donuts! He was asleep when we got back. My dad said he had a nose bleed the entire time we were gone. My parents went back to their hotel. Stephen went to lay down so he could sleep while I stayed up with Max. The ICU nurse came in and said Max needed some meds. So I first took some pictures of him sleeping because he was so stinkin cute. Then I woke him up. He took his medicine. I sat him up in the bed and told him I had a surprise for him. I put the donut box on his lap. He smiled the prettiest smile ever!! He took a bite and said, “How many can I have?” I told him all of thim if he wanted. About half way through his first donut (he still had a bite in his mouth) he looked up at me and said, “I’m tired momma.” I said, “I know baby. It’s ok. I love you.” He layed back and went into a severe seizure. I yelled for help. I watched my precious boy ball up. I watched his eyes roll in the back of his head. I watched him twitching around. I saw him take his last breath. The nurses started cpr right away. I called my mom yelling, “He’s gone. My baby is gone!!” Stephen woke up to the yelling. The icu room filled up quickly. They made a line between us and Max so they could take turns doing cpr. I could still see my baby. I watched them intubate him and his loose toothe fell out. I don’t remember parts of that moment. I was told that I prayed so loud they could hear me throughout icu and the waiting room. I begged God to perform a miracle! I begged God to take me instead! I begged and begged to give me my baby! I prayed for everyone who was touching my son to see a miracle in all of this. I remember bartering with God. I remember hearing the doctor shout out orders to everyone. A surgeon came in and said they needed to do open heart surgery. I signed the paper and thought they would take him to the OR. No….they did it right in the ICU room with us there. They tried to make a wall between us and him but I saw what they were doing to my baby. At 11:55 pm a lady came over and said the machine was breathing for him. “There is nothing else we can do.” So Stephen told them to stop. I sat there in complete shock. It felt like a horrible nightmare. They cleaned Max up and wrapped him in a white sheet. They handed him to my dad and my dad handed him to me. He was so warm. How could he be gone? I felt his chest….no heart beat. I tried moving him thinking he would wake up. He didn’t. I could see his beautiful blue eyes. I rubbed my hands through his hair, counted the freckles on his face, felt his nose, eyes, lips cheeks, ears, hands, fingers, arms, feet, toes legs and whatever I could. I held him until he was ice cold. Then Stephen got to hold him. I saw that Max’s face was dirty so, like all mothers do, I licked my finger and cleaned his face. We had to go. So my dad took Max and placed him back on the table. I kissed him so many times. I didn’t know how to leave without my son. I am a VERY protective mom! I wanted to stay with him and make sure he was being treated good. But I had to leave the hospital without my baby boy. I didn’t know how long it would be until I saw him again. We had a 5 hour ride home.
I had to call Stevie to tell him his baby brother died. Call Red Cross to get Stevie a flight home. Stevie had to get a loan to fly home. Red Cross doesn’t pay for them any more. I slept the rest of the way home. When we got home we had to tell Nick and Corey. I hate that my boys had to go through all of that pain!!!
Maxwell Joseph Rocklin passed away on July 16, 2014 just 5 days before his 8th birthday.
Max was the funniest, cutest, smartest, toughest, loving, caring, giving, beautiful and handsome little Super Hero. He may have been littlle but he is MIGHTY!
His funeral was the day before his birthday. I wanted it to be a child’s funeral. So in the plants and flowers were Super heros.There were balloons. Some friends made super hero posters with Max’s pictures all over them. They also made superhero pins. We wore super hero tshirts. The night of his viewing a dear friend and his son dressed up at super heros. The day of his funeral my cousin’s husband dressed up as a super hero. The funeral home was packed full. I had several dear friends sing for Max. Rev Christ Turner did an amazing job also. I was in such a daze. I don’t remember the faces of everyone there. I just wanted to be with Max. I wanted to constantly rub my hands through his hair, kiss him, and tried to hug him. I knew those were the last moments I would ever see my baby boy on this Earth again!
Since Max’s passing we have recieved so much love and support. I can’t name everyone and everything they have done. Literally there is hundreds of people that have been here for our family! Max is loved by so many! He made me so proud of him. The selfish part of me wants him back no matter what. But if Max had lived he would not have been able to be a regular little boy. He couldn’t over exert himself, had to wear shoes even in the house, one little cut he could have bled to death (From the coumadin), he would have to stay away from anyone who was sick. I forgot to add that Max had several heart attacks while in the hospital and at home. He would just say his chest hurt. They never did an xray or anything the first week he was in the hospital. Max has saved so many lives since he has gone to Heaven. I prayed for a miracle and for Max to be healed. This was not the miracle or healing I wanted. But it is what God knew Max needed. Believe me that is hard to say. I love Max so much that I am thankful he is no longer in pain. But I want to hold my sweet boy. I want to hug him. I want to be his mommy. I always will be. But not the way I want to.”
I would like to thank Maryann for allowing me to share her incredibly sad story. My heart has known the pain that this disease can cause, but my heart will heal with every breath that my daughter takes. There will never be enough words to express my sadness that Kawasaki Disease took her son from this world, or any of the other children who lost their battle. What I do know is that stories like these will serve to ensure that I do not allow myself to take one second of this life with our daughter (and her siblings) for granted.
And every month, on the 16th, I will try to remember to pay it forward for Mighty Max.